Surgery tomorrow

So tomorrow is surgery. We have to be there at 5:30am, and I go into the OR at 7:30am. You had better believe that I will be getting monster doses of medazalam as soon as they get that IV in me! Not that I'm a stranger to surgery, but this feels very different than all my prior minor surgeries, probably because I'm losing several feet of my colon/rectum, my uterus, and 4-6 lbs of lymph tissue.

But I'll have epidurals for the first 48 hours or so, followed by IV morphine, so hopefully I won't feel much for a while.

Today was spent mostly drinking a gallon of nuclear laxative and dealing with the effects of said gallon of nuclear laxative. I cannot believe that there is not a more pleasant way to accomplish the same effect, I mean seriously! I wish my training in any way equipped me to be able to work on a less awful solution. Because seriously, a full GALLON?! Of gunk that tastes roughly like rotten seawater, in which stinky socks have been stewing for several days. I started to gag on the third glass, and still had two thirds of a GALLON left to go. Man. But at least that's over with. Now it's just dealing with my brain that is desperately craving carbs (after a full day of nothing but clear liquids). As soon as I'm done loading my various electronic devices with sufficient amounts of entertainment material, I'm going to drug myself to sleep to avoid a) serious hunger pangs and b) ever-increasing levels of anxiety.

Greg will post something here tomorrow after I'm out of surgery to let folks know how it goes. He will also post something (perhaps the same thing) to Facebook.

I feel like I should say something profound, since there is still a small chance I won't make it out of surgery. But all I can think about are cookies. Lots and lots of cookies! So here's to no more periods ever! (I will not be sad to not have to think about that ever again.) And most importantly, NO MORE TUMOR!!!

Update from last week

I only just realized I never said anything about the scan last week. It was completely eclipsed by the news that they thought I might have HNPCC, so it fell by the wayside.

My scan was not great, but not terrible. There was a shadow that may or may not be tumor; the scan didn't provide enough information to tell. It looked almost identical to my scan after chemo, which is not great, but not terrible.

My initial scan was very clear that I had a giant tumor. After chemo, the tumor had melted to the point where there was just this shadow, in the same place as my tumor was, but there's no way to tell if that shadow was tumor or inflammation or something else entirely. And it looked the same after radiation. So that means that the tumor did not grow like crazy during radiation, which is good. But it didn't completely eliminate the shadow of maybe-tumor, so that's less good. Basically, we got zero information from the scan. And it didn't really provide any more information about the odds that I'd need a colostomy either. So it was a lot of anxiety for no information (which was sort of what I wanted anyhow, no information).

We'll know a LOT more once we get the pathology back after surgery, which usually takes around two weeks. Apparently my surgeon doesn't bother to cut out individual lymph nodes in cases like mine, since odds are reasonable that many are infected; she just cuts out the whole chunk of tissue and sends it to the path lab and they sort through the tissue to find all the lymph nodes and test each of them for cancer. Obviously, the fewer that come back positive, the better my prognosis will be. The best case would be if they got in there and there was no more evidence of tumor and all the lymph nodes came back clean. Realistically, this is highly unlikely. But a small tumor and no lymph nodes would be great! So we'll just have to wait and see. At least by that point the scary awful unknown-ness will be over and I'll just have the awful known-ness of chemo left.

We did decide to go ahead and do the hysterectomy, which resulted in no shortage of tears. It's odd how much it pains me to think about it, even though I know it will have very little impact on my life, given that the odds I will ever get pregnant are essentially zero. But it's still hard, and continues to be hard. Until we manage to have kids via a surrogate or adoption, I'm not sure it will ever stop being hard. I've teared up at more than one diaper commercial this week, and find pictures of babies even more sad than usual. But I also think once it's done and out of my hands (I could still conceivably change my mind at this point) it will get easier. In many respects, losing complete control of my life has been one of the hardest parts of this, but in other respects not having any choice in the matter can be a relief.

If I honestly sit down and think about it, I am absolutely terrified of surgery. I've spent this week frantically working to make sure that things are in place at work for me to be out for a long time, which has left me with little time to think about it. But it is truly, honestly, terrifying. (sigh) Again, though, with the lack of choice being a relief, I know that if I don't do this I will die soon with probability 1 (and yes, I realize that we all will die with probability 1), so even if surgery carries a 2.5% chance of death, that's still 97.5% better odds than no surgery. It's not like I really have any choice.

Tests just came back, and there is a 99%+ chance I do NOT have HNPCC!!!

Monster mutations

So there are two main genetic mutations that cause colon cancer in extremely young people like me, FAP and HNPCC. FAP basically turns your colon into thousands of polyps, and since I only had two polyps (one which had turned into my giant tumor, and one that was tiny), we are confident I do not have FAP. HNPCC, on the other hand, is typically diagnosed from a family history of colon cancers or other abdominal cancers. My closest relative with colon cancer is my dad's cousin, who was diagnosed at over 60 (not indicative of HNPCC), and the only other abdominal cancer in my family is my maternal grandfather's pancreatic cancer. Also, HNPCC-related colon cancers nearly always occur in the ascending or transverse colon, and mine is low in the descending colon. So despite my desire for genetic testing, my medical oncologist said she felt confident enough that I didn't have HNPCC that we didn't need to test for it before surgery.

Very often, if you have HNPCC, they will surgically remove the entire colon, because the risk of recurrent colon cancer is so high. The second most common cancer associated with HNPCC is endometrial cancer, so they often do hysterectomies as well. Sometimes they also take out the bladder and as much of the soft tissue as they can, to remove everything that you can possibly live without that might become cancerous.

But my oncologist had convinced me that I didn't have it and so we didn't need to test for it. The genetic tests take about 6 weeks to come back. I am nearly always in favor of more information, but she has proven herself to be so extremely competent (see the incident with the clot) that I just trusted her.

The surgeon who did my ovarian transposition (the surgery to move my ovaries up out of my pelvis so they didn't get fried in the radiation) said that if I were his wife or daughter, he would want me to have a hysterectomy at the same time as my major surgery. The rationale for this was that there's an increased risk that I could develop secondary uterine cancers as a result of the pelvic radiation, including a nasty form of incurable sarcoma, and my uterus is useless for childbearing, so why not just take it out and remove that risk. Additionally, the recovery time from my surgery would be no greater with a hysterectomy than without, and performing a hysterectomy later, after my pelvis is full of scar tissue from this surgery, would be much more difficult and time-consuming (though not impossible). The first time I heard this argument, it made a lot of sense to me. I'm pretty deeply risk-averse, and I think cancer has only made me more so, so why keep my uterus around if it's not going to serve its intended purpose and makes it more likely I'll have to go through this nightmare of cancer treatment again.

But then I went back to my medical oncologist and she said, essentially, surgeons like to cut out organs, of course he wants to remove your uterus. And she emphasized that everything he said is 100% true, but that it is highly unorthodox to perform a prophylactic hysterectomy on a woman of my age. She said her job was to cure me of my colorectal cancer, while leaving me as intact and normal as possible, and removing my uterus wasn't necessary and why not leave me as whole as we can. During radiation, I asked my radiation oncologist what he thought about a prophylactic hysterectomy, and his response was that he has treated thousands of patients for colorectal cancer, several of them young women, and he doesn't know of a single patient who had a hysterectomy without any evidence of disease or metastasis. So after that, I was fairly convinced that it was unnecessary. I'd also done some reading, and there is a small but real chance of fairly severe sexual dysfunction in young women following hysterectomy, which I'd like to avoid if at all possible.

But then on Wednesday, my surgeon announced that she feels strongly that I should have a hysterectomy. And she had pulled my original tumor biopsies from MGH (Mass General Hospital) to have her pathologist stain them for some specific markers (MSI) that are indicative of HNPCC. Prior to that revelation, we were confident I did not have HNPCC. But apparently at some point a test had been run that showed that my tumor was APC-negative, which dramatically increases the chances that I have HNPCC. So much so that my medical oncologist now agrees with my surgeon that even if the marker tests come back negative, it is still a good idea for me to have a hysterectomy.

And apparently even if the MSI-marker tests come back negative there is still a very small chance I could have HNPCC. If they come back positive, it is highly likely that I have HNPCC.

So my medical oncologist set me up with a genetic counseling appointment this afternoon (in an hour, actually) and put a rush on the HNPCC test. So we might have that back in a week or two, rather than having to wait the normal 6 weeks. I suck at waiting.

So it's back to the hospital for me! Whee!! And hopefully we'll hear about the MSI-marker results soon. I don't want to have to continue to deal with this uncertainty through the weekend. But at this point, I guess it almost doesn't matter. Because the MSI-marker tests aren't conclusive in either direction. And both my surgeon and my medical oncologist agree that I should have the hysterectomy regardless of what the tests say. I still just suck at waiting.

And I thought the scan results were the only thing I had to be worried about. HA! Cancer: full of freaking scary unknown unknowns.

Rollercoasters and roosters

So I feel a little like my life is a rollercoaster these days. When I'm feeling good, I feel very nearly healthy and thus great, but then inevitably the fatigue/nausea/anxiety catches up to me and I crater. It's so nice to have the good moments, though, that I'll take any/all of the craters just to be able to feel normal for a little bit.

Tomorrow I go in for a full day of appointments. I have a scan at 6:30am, then I meet with the surgeon to get the results of that scan at 9, followed by my pre-op anesthesia consult, and meeting with the ostomy team. I am NOT looking forward to it, mostly because everything that reminds me of surgery these days induces rather extreme anxiety. And while the prospect of getting good prognostic news from the scan is great, the fear of getting bad news totally outweighs the good. I have spent nearly all my life in search of data and information, and here for one of the first times I can remember, I think I'd really rather not know.

The main purpose of the scan is to give the surgeon a better sense of the odds that I will need a temporary colostomy, so that she can plan accordingly. Even if the scan looks great, it's still not going to be 100% that I won't need one, as there are apparently some issues that could pop up once she gets in there that would require a colostomy. But she said that if she doesn't have to do one, she won't, which is great news. But because there's still a chance I'll need one, I still have to meet with the ostomy team to go over where they're going to put it and caring for it and everything else. And, in the process of looking at the tumor to determine if I need a colostomy, we will also get my cancer restaged. And from everything I've read, stage at surgery is the single greatest predictive factor of survival. So if it's not good news it will be very hard.

The hospital also requires that I fill out advance directives/living wills/will wills before surgery, to make things easier on them in the event that I become incapacitated or die. While my surgery is long and complex (removing a large chunk of one's colon and rectum while allowing it to still function is not easy), it was not considered a risky surgery until I had my clot. Now, because of the clot, it is much higher risk, which makes me less than happy. But my surgeon hasn't ever lost a young patient on the table, so with any luck I won't be the first.

It's all just nerve-wracking. And to make things even more stressful, my husband is on the job market and has his first job talk on Monday! We fly out on Sunday morning (because with impending surgery/incapacitation, we'd rather be together than not, even for things like job talks), so he's terribly stressed about that aspect of his life, and about losing all day Wednesday to ferrying me around the hospital. As he likes to say, in any kind of normal world, going on the job market the first time should be the most stressful event in any young academic's life. Unfortunately, for us it's a distant second to my cancer treatment.

And the brakes on my husband's car went out on Friday in the midst of the big snow/ice storm, so we're still awaiting word from the mechanic on what the damage will be. Remarkably, they went out as he was stopped at a light, so he's fine, because with the roads covered in ice that could have been VERY bad. But it's an 11 yr old car, so if it's going to be a lot to fix, we might be in the market for a new car. Because that's not stressful either. So we're living in a state of basically constant stress and anxiety, which is less than fun.

But one week from today the first job talk and interviews will be done and we'll be on our way back to Boston, and two weeks from today, I'll be under anesthesia having my guts sliced and diced. So hopefully once we're through those two hurdles things will be less stressful. Though, to be fair, we were saying that as we were working 100+ hrs/week trying to work full time and finish the house in Michigan - once we sell the house and move, things will be less stressful. Oh how wrong we were!